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Barb1260

And the results are in! Now a new symptom?

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Woke up to my PET results in email this morning, before even speaking to the doc.  Wasn't expecting NED because of the original size but to me they are good-at least I think so.   Tumor original size was 6.9x6.2 cm, now 2.6x3. Original SUV 20, now 5.6.   Lymphn node originally 3.5x2.8cm, now 1.2x1.7.  SUV was 19.6 now 3.9.  

No other findings except new regions of airspace in lung apex, right upper lobe and right lower lobe-what does this mean?  From the radiation?  So what I get from this is it hasn't spread, it has shrunk and SUV is lower.  Am I reading this right?  So next step is either 2 blasts of chemo and/or Imfinzi. 

All weekend my neck has been swollen from the port catheter area going around my neck to the back above the collar bone.  The PET said no enlarged lymph nodes there so that is a good thing.  I noticed the swelling Thursday night, the PET was that morning so I am thinking it would have been seen.  Onc's office said to call the surgeon who placed the port.  Went to the surgeon's office, did an ultrasound, no blood clot and port looks perfect.  So why the heck is my neck swollen.  My ear and sinuses feel funny but I've never had swelling that low from that before.  No pain, no tenderness, no fever.  More radiation lingering side effects maybe?  Somebody in my support group said their entire neck swelled after but I'm not so sure.  There is always the good with the bad-can't I just celebrate without worrying about something, geez!  

All in all, a good day.

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So happy it was a good day!  I think you’re right in that the chemo & radiation knocked it down quite a bit. 

What are your thoughts about immunotherapy?  I understand the uncharted territory however I’ve now met a few people that are NED as a result.  I saw my hippie doctor today & he said for those with a high PDL-1 expression, immunotherapy can be considered curative. 

The port thing sucks!  I hope they get to the bottom of it.  I wonder if there was a reaction to the PET contrast?  

Jersey Strong! 

Michelle

 

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As far as immunotherapy, I’m all for anything that might work-I’ll try anything once. Didn’t have contrast for the PET, just the sugar drink and shot or is the shot contrast?   The 2 main things I was concerned about-lymph nodes and blood clot are negative so I’m not going to stress. I’ll see the oncologist Thursday and take it from there. Hope you stay well 

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1 hour ago, PaulaC said:

It sounds like good news to me. I know it’s not easy but try not to worry. 

FYI I think the shot was the contrast. 

Me too- whatever they put in your port makes me wonder if you had a mild allergic reaction.  Let us now what the doc says! 

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Awesome--sounds like you got a great response!

What you're describing almost sounds to me like the crepitus I had after surgery.  I did a quick search and found an article where doctors suspected that the patient's unexplained subcutaneous emphysema (another word for crepitus) was possibly caused by placement of the port.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5890461/  Note that it resolved on its own in a few days.  Just a thought.  The first thing I thought, when it developed, was that my glands were swollen--that's what I told the nurses.  Hope they figure it out and that it's resolved soon.

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Wow-thanks Lexie. I will definitely read up on that and ask the doc. You are a fountain of knowledge. Have a great day 

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Barb,

My take: PET scan results are great, no GREAT! Everything is moving in the right direction.

I agree with Lexie, the neck swelling is likely your body getting use to the port placement.  The surgeon's diagnostics didn't reveal any problems so I'm hoping this symptom will resolve in time. I'm not sure what the finding "new regions of airspace in the lung apex" means but it doesn't mean a new metastasis. So I'd celebrate the wonderful results.

Life always presents with good and bad; enjoy the former and ignore the latter.

Stay the course.

Tom

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The port has been in since January. Wondering if it can still be the issue like you and Lexie have said. Thanks for your continued optimism. 

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The oncologist was ecstatic with the PET results. Lot of inflammation from the radiation so she wants me to see the pulmonologist for a lung capacity test before starting the Imfinzi. Something about shortness of breath as a side effect. She’s being very cautious because of the newness of these drugs. So 2 more weeks before the next phase. The neck thing she thinks is unrelated. It’s telephone neck from going back to work-back to using my headset. Had this before but never strained the muscle so bad it swelled. 

 

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